PANCARESURFUP

PanCare Childhood and Adolescent Cancer Survivor Care and Follow-up Studies

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 Obiettivo del progetto (Objective)

'Over the last 40 years, treatment for childhood and adolescent cancer has improved greatly; 5- year survival after childhood cancer is now 80% in developed countries. Approximately 1 individual in 750 of young adults is now a childhood cancer survivor. Epidemiologic data on the number of European childhood cancer long-term survivors are not available, but estimates suggest a number between 300,000 and 500,000. However, significant differences in both survival and services for long-term follow-up exist across Europe. Recent research from North America has shown that the frequency of late complications continues to rise as the length of follow-up increases with, so far, no evidence of a plateau of incidence. Some late complications of treatment lead to chronic ill health or disability, and thereby constitute a significant burden both on individuals and families, and on health services and society. However, there is considerable opportunity for early identification and appropriate management of complications to improve the survivors’ health and quality of life, and to maximise efficient use of health services. PanCareSurFup proposes an integrated group of research and service projects to meet these needs. PanCareSurFup will, through cooperation with existing registries and databases, collect data on the risks of complications of cancer treatments to create a retrospective European cohort. Using this cohort research will centre on cardiac toxicity, second cancers and late mortality, with service projects based on a study of models of follow-up and transition to adult care. PanCareSurFup will describe risks of complications of treatment received. Risk prediction and guidelines for care and education will be based on our research and existing evidence, and tailored for each country. The expected benefit is to provide every European childhood cancer survivor with better access to care and better long-term health.'

Introduzione (Teaser)

A European consortium will follow a large cohort of childhood cancer survivors to assess the impact of cancer treatment on morbidities and late mortality. Through harmonised guidelines, the PANCARESURFUP study aims to improve the follow-up of patients and help shape future decisions on cancer treatment.

Descrizione progetto (Article)

Nearly 80 % of childhood cancers have a survival rate of at least five years. The increasing number of survivors has raised considerable concern about the long-term consequences of cancer treatment to the organs and tissues of a child.

The key objective of the EU-funded 'PanCare childhood and adolescent cancer survivor care and follow-up studies' (PANCARESURFUP) is to understand the late effects of cancer treatment. To this end, partners from 16 institutions in 11 countries have teamed up to establish the largest cohort to date of patients who have survived childhood cancer.

PANCARESURFUP will investigate the incidence of heart problems and the emergence of secondary tumours of both adult type and sarcomas following treatment of childhood cancer. The collected information will be used for developing risk estimates of these morbidities as well as of late mortality (death occurring more than five years after diagnosis). Comparison with data obtained for the general population will provide insight into the effect of radiotherapy and chemotherapy in developing these problems later in life.

A key component to this analysis is to link each case with the dose of administered radiation and to estimate the dose received by the different parts of the body (e.g. heart, kidneys and thyroid). For this purpose, researchers are developing and testing specialised radiation dosimetry software. In order to sustain and organise the collection of patient information, consortium members have also sent out a questionnaire to identify current follow-up practices of different countries and formulate appropriate long-term follow-up guidelines as well as establishing recommendations for how the follow-up can be organized and how the transition from paediatric to adult care can be achieved in a safe and satisfactory way.

The PANCARESURFUP pan-European study will provide invaluable estimates of the risks arising from very specific anti-cancer therapies for life-threatening effects. Based on these estimates, clinicians will be able to make more informed predictions about the treatment outcomes later on in patients' lives.